I'm the mother of Ralph, born April 29, 2007 with meconium aspriation syndrome and an atrial septal defect. He developed pulmonary hypertension as a result. He also has Down Syndrome. Ralph has 7 brothers and 2 sisters. These are our stories...

Friday, December 31, 2010

The family is playing Yatzee while I put these photos up. We are snacking on veggies and dip, crackers and sausage and such. Our New Year's Eve tradition. Tomorrow I get to meet my new daughter. More about that later...

2010 was an incredible year for our family. Really almost unbelievable. We are so very blessed beyond comprehension. More about that later...

Ralph, again, with his cars. He made a new parking lot in the kitchen yesterday.

Yesterday was one of those precious gifts from God...a 65 F day at the end of December. How wonderful to get outside and soak up a little sunshine and fresh air!!

We are in Kansas, after all, so the wind was blowing. Theo was none too pleased with the hat I made him wear!

Once he started swinging he forgot about being angry with me. Nothing but smiles!!

I had to sneak around the fort to get Ralph to look at the camera!

See? Not going to look at me!

When the tongue is out that far, he's having a great time!

Did I mention that Ralph is such a big boy now? Look at him go on the big boy swing!!

Got him!!

I needed a little help pushing Theo, so Ralph stepped up to the plate.

Look who I found playing together!

This is so rare! The boys like each other but normally play quite far apart. I'm sure before too long they will be best friends and partners in crime!

Wherever you are, I hope that you enjoy your own New Year's celebration. May 2011 be just as awesome!!!!!!

Thursday, December 30, 2010

Do you like our tree with no ornaments? Actually the ornaments were all up high, out of reach of little hands. Here are Thomas and Ralph gazing at the gifts from Santa while I finish up the morning diaper changes. Gotta get everyone squared away before they dig in!Ruby was very cute with her new pony and her new tea set. She's a little lady.

Zhen opened his Tonka truck and disappeared into his bedroom to play!

Ralph loved his light up spinner that he found in his stocking.

Ralph has recently decided that he is through looking at the camera for me. Every time I ask him to say cheese he turns his back on me! Little turkey.

By the day after Christmas we were on the downhill slide. Lots of snotty, drippy noses. Lots of coughing. The next day sore throats, headaches and general misery. I've been to bed before 9pm all week long! Now that is sick!

A few doctor visits and a boatload of prescriptions later, we all seem to be on the upswing. Just in time for the new year. Today we enjoyed the gift of a 65 degree day. It's so fantastic at the end of December to be able to send the kids out to play and get some sunshine without heavy coats.

Wednesday, December 22, 2010

Ralph was so sweetly playing with his cars the other day. He was concentrating so hard that I was able to get some photos without him even noticing. Even with the flash!

Lining them up neatly.Oooh! This one is special.

Let's park on the end.

Perfect!

Look what we got this week!! Ankle-foot braces for the three boys. Strangely enough, Ralph likes wearing his braces and even attempts to put them on by himself. Zhen was not so pleased with them. Not yet, anyway. He won't even stand or try to walk in them yet.

Theo...well...what do I say. I'm going to have to hunt for the right shoes for him to wear with these. I'm going to have to make myself put them on him each morning, I believe. Once he starts school next month it will make more sense. Aren't they soooooooo cute?!

I can't forget about Ruby. Here she's working on an ice cream cone with no assistance. I think I should have made "no assistance" her middle name. This girl is IN-dependent! She is also wearing one of Rose's shirts. How fun that they are already sharing clothes!

It wouldn't be Christmas without playing with some bead garland, would it?

Or, sporting eggnog mustaches!

My fantastic husband had to work very hard to get the lights working on our Christmas tree this year. God willing, we will finally get to decorate it tomorrow night!

Also, the kids want to go caroling. So we are making a little song sheet and practicing. I think we will take some cookies to the neighbors and treat them to a song. I'll let you know if that actually happens!! You know how the best laid plans sometimes go, right?

Tuesday, December 21, 2010

My life is so fun! There is always something happening and it can be exasperating when that something is mainly poop or snot or dishes or laundry. But, life around here is never dull. That is for sure!

Quick cute story for you today. This beautiful song was on the radio as I was driving to the store today. I took Ralph with me, because he's the main troublemaker among my 5 and unders. Poor Chipper was babysitting for me, so I thought I'd give him a break from dealing with Ralph. Besides, I like shopping with Ralph. He's a blast!

So, OK. Listen to the song. It's a great message, huh?

Well, I was listening to the song and driving when it really did happen in a blink! It happened in a flash! In the time it took to look back, Ralph was GONE!!

He had busted out of his carseat and was trying out all the different seats in the van. It's a big van. See what I mean? Never dull. :)

Friday, December 17, 2010

Ruby loves Theo. Almost as much as I do and that's saying a lot! She's like a little mommy to him even though he is almost 3 years older that she is.

Today I wrote HERE about the miracle of Theo learning to sit up. What a privilege for my whole family to witness Theo blossoming. As he is blooming our hearts are unfolding! It reminds me of this hymn:

Joyful, joyful, we adore thee,God of glory, Lord of love;hearts unfold like flowers before thee,opening to the sun above.Melt the clouds of sin and sadness;drive the dark of doubt away.Giver of immortal gladness,fill us with the light of day!

Oh! The cuteness! I can hardly stand it!!

So Ralph's been at school lately and I haven't taken many photos of him. Now that all the kids are out for Winter (ha! It's Christmas, you can't fool me!) break I will make a point to snap some more memories.

Tuesday, December 14, 2010

Merry Christmas to you dear readers! This is my little gift to you...a gift that I received when I became friends with Donna and her daughter Jill. Because of these friends, I was able to joyfully accept that my son Ralph was born with Down Syndrome. Enjoy!

Jill's story - written by her mother, Donna:

Jill was born in 1964 (back in the dark ages of mental retardation). She was not diagnosed with Down Syndrome until she was 3 months old. There were no tests back then to determine this condition, but we knew she had a developmental disability from birth. Parents just know these things sometimes, don't they?

On a visit to the the pediatrician at 3 months of age, the doctor picked up Jill under her arms. She slipped right through his hands. He said, "Yes, I believe she is retarded. Now, you will need to decide what to do with her. I must advise you that she will probably never be able to walk or talk. Most certainly not be able to read or write. I would advise you to put her in an institution."

I replied, "We have had her as part of our family for 3 months and have learned to love her and see potential in her. We will keep her in our home!"

Jill had a fairly normal life growing up. She just did things a little slower than most kids. She not only learned to walk and talk, but learned to read and write, ski, roller skate, dance, and play the piano. She rode the bus downtown to her job at a bank for several years.

She began taking piano lessons at age 16. We realized the talent she had when she sat at the piano and played melodies with her right hand. It was time for piano lessons! I asked a former student of my husband (who was a music teacher) if she knew of a college student who needed the money and would be willing to take Jill as a piano student. To my surprise she said, "I would!" Jill took lessons for several years, learned to read music and even learned to memorize everything she played.

To this day she practices a half hour every day except Sunday. She has had the opportunity to play all over the state, for many schools, at weddings and parties and at the state fair. We have always had the philosophy that Jill can do anything anyone else can do - it just might take her a little longer. I'm so glad we decided to keep her out of an institution!

***I'll be passing along any kind comments that you have to share with Donna and Jill.***

Saturday, December 11, 2010

I've forgotten how much I like getting up early in the morning. I'm normally up pretty late to give meds to Ralph so mornings have not been my friend for a very long time.

But I used to get up early. As a child I would slip out of bed a 5:30-ish and join my grandma and grandpa in the kitchen. They would be drinking coffee and reading the paper and it felt special just to be hanging out with them. Grandma would normally make me some bacon and toast and occasionally I'd get a cup of sweet milky coffee! What a treat!

As a teenager I worked at our family's restaurant. We served breakfast and lunch and then closed at 3pm, so I almost always had to be there before 6am. I remember the lonely drive across town. The traffic lights that turn red when you approach, even though no one else is on the road!

I just dropped a child off at school for a wrestling tournament and experienced that lonely early morning drive again. It took be back. I could have easily gone back to bed, but I thought I would get a jump start on my day. As a mother of many, it is a good thing to be up and ready before the children wake. It puts me more in control of the day. I'm ready for the little heathens!!

The Down Syndrome Society Christmas party is today. All the kids are very excited and hope to see some old friends. I was sure to charge the camera so it doesn't die on me like it did last Sunday at church when the little kids were singing. Speaking of cameras...look at some of the photos I captured last week:

Theo gave peas a chance.

He LOVED them!Thomas had a little mishap with a pixie stix.

My goodness he is looking grown up-ish! Except for the blue sugar on his face and shirt!

And speaking of grown up...Ralph and his awesome cardio nurse! She ended up having to take his blood pressure the old fashioned way when he couldn't quite be still enough for the machine.

Guess who loves having a new brother!

They like each other a lot! This tickle-fest went on for quite awhile...

...until someone got bitten. Yes, Zhen has some teeth.

Here is Ruby. All alone in the van with mommy. Brother's are all at school and she's chillin'. This girl...what can I say. She deserves a blog post all her own. I'll get right on that!

Wednesday, December 8, 2010

He sang some Christmas songs in church last Sunday with the other children from 3 years - Kindergarten. As I walked up the stairs to the stage with him he grabbed a microphone with both hands like he knew exactly what he was doing. On the way to stand on the risers he spied a guitar and also a bass. It was all I could do to keep him in his spot on the back row and focused on the songs. He's really a natural performer.

Here Ralph is dancing along with the Wiggles.

Flying on mommy's feet.

Ralph is also winning the battle against pulmonary hypertension. He was such a big boy at his cardiology appointment this week. He let the nurse take his oxygen levels and he even let her get all the leads on for his EKG! Not too long ago it was a struggle to get him to be still enough to get good readings. He's really growing up!

He was also a good boy for his heart echo. His right heart size looks good. His implanted device looks good too. His pulmonary pressures were the lowest ever. Sooooooo....(drum roll please).....

We are officially weaning his pulmonary hypertension meds!!! I have waited for 3 1/2 years to say that...wow! It's very scary for me to think that in 10 weeks he will be completely off all of his medications. With everything that he has been through I'm just feeling so blessed that he's this healthy today.

Psalm 103:1-5

Praise the LORD, my soul;all my inmost being, praise his holy name.Praise the LORD, my soul,and forget not all his benefits—who forgives all your sinsand heals all your diseases,who redeems your life from the pitand crowns you with love and compassion,who satisfies your desires with good thingsso that your youth is renewed like the eagle’s.

Thursday, December 2, 2010

Since termination is such a common option for children with Down syndrome, why aren't typical developing children diagnosed like this?

How to give parents a pre-natal diagnosis:

I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are oftenunhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrasment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.